In the woods and in Oklahoma, in New York

Central Park woods

I “only” got stuck three times in my most recent ECP session, so that is progress.  I thanked the nurse who got the needle in my arm on the second try. She said she didn’t know why I was thanking her and I said it was because the last nurse did it three times. It is a very yucky feeling when it doesn’t go in right. They get it in but it hurts in an unusual and specific way that tells me it has to come out and they have to give it another try.

The added Cymbalta at first seemed to help my aching feet, but then it didn’t, and it is confusing and upsetting because no one person says the same thing as to whether to add a certain drug or try more CBD and a small amount of THC and if so, how much and how often. I am on a relatively low dose of gabapentin – 1500 milligrams a day – and the neurologist had said I could take more but didn’t specify how much. I met a woman who is on 2,400 mgs., and it seems to help but then it messes with her head. Neuropathy sufferers can bond the way plantar fasciitis sufferers do. If you don’t have it, you don’t get how pain in your feet can affect your head. The woman and I talked about how odd it is that your feet can feel numb, and as though they’re wrapped in gauze, and be painful and tingling at the same time.

I think I need to see the neurologist again to get more specifics, and now I will just revert to an oldie but goodie: yada yada yada. 

Though I haven’t been having luck with my feet, I’ve had it on a couple of other fronts while in New York for a week.

View from theater seats

On Monday, I went to a yoga studio where I’ve been a couple of times, YogaWorks Eastside, and said I wanted to pay for a week’s worth of classes. The person at the desk said he had no record of me, and therefore I did not exist, and therefore I could have a free week of yoga. And also a free loaner mat. I wasn’t going to protest. He signed me up for a week’s worth of classes. The teacher of the Hatha Yoga class that I was about to take was listening. At the end of the class, she smiled and said, “Now you exist.” I took the same class today, bookmarking the week. I haven’t done yoga every day since I was in Costa Rica! 

The guidance has seemed very New York, focusing on getting anxiety to subside and quieting the tendency to rush around mentally with all the physical rushing around city streets. Since some might say I’m a little bit hyper (yes, also anxious) and that I rush around more than I need to (with the city possibly imprinted on my psyche), it has suited me well.  

The other day I entered the Today Tix lottery to see if I could get $40 rush tickets to see Oklahoma. (Following my daughter’s lead, again.) After yoga I walked through a downpour to Circle in the Square theater so I could talk to someone in the box office about seating availability. I usually do it on line but different sites had different prices and I wanted help sorting it out. It was 2 p.m., the time of the lottery drawing. I didn’t get the tickets, but I got an offer of $60 per ticket for seats that cost twice as much on some sites. 

The box office person gave me seats in the second row, and since she did it for me, I didn’t have to pay the service fee that I would have had to pay on line. The downpour continued through show time. It's a good thing it wasn't cold, because my feet were soaking wet. As my theater scout warned me, it had very dark undertones. Still, it leaves you humming.

As the New York Times review explained: the director has "reconceived a work often seen as a byword for can-do optimism as a mirror for our age of doubt and anxiety. This is “Oklahoma!” for an era in which longstanding American legacies are being examined with newly skeptical eyes. Such a metamorphosis has been realized with scarcely a changed word of Oscar Hammerstein II’s original book and lyrics. This isn’t an act of plunder, but of reclamation. And a cozy old friend starts to seem like a figure of disturbing — and exciting — depth and complexity."

In other news, I ate a giant matzo ball and walked in the North Woods section of Central Park, an unexplored area for me. At least the neuropathy doesn't keep me from getting around. Putting CBD lotion on my feet seems to help. In any case it feels good. 

Celebrating two momentous birthdays

You might think it odd that I thought tomorrow was my birthday while it’s really today, but you might cut me some slack if I reminded you that I have had five birthdays, and it’s hard to keep them straight.

Top, with my donor, Denise Ledvina, in 2011;
bottom, celebrating Marge's 100th birthday this weekend

Today is actually my re-birthday, the 10th anniversary of my fourth stem cell transplant. I didn’t realize it was today until my donor, Denise, sent a happy re-birthday email.

I think I knew at one point that I was off by a day, and I was going to fix it on the blog intro, but then it slipped my mind.

The momentous occasion took place around 9:30 p.m. on Jan. 30, 2009.

My re-birthday dessert

I double checked by looking back at my blog post from the day after the transplant.

It began, “I meant to post yesterday evening at my leisure while awaiting my cells, which I thought were due to arrive at the cell manipulation lab at 9:30 p.m. and would therefore come to me around 11. (Cell manipulation lab sounds so futuristic; I am grateful that in terms of scientific advances, the future is now.) Then Helen, my nurse last night, said they would be ready for actual infusion around 9:30 and that she would begin pre-medicating me at 9 with Ativan and Benadryl, at which point I got all discombobulated and couldn’t eat my dinner, let alone write.

"It’s not that you have to do anything to receive the cells; you just lie there and try to stay calm. But it feels momentous, especially when they hook you up to a monitor tracking your heart rate, blood pressure and oxygen saturation. Of course it also feels enormous because I know how important those cells are to me. The infusion took about 45 minutes and went smoothly most of the way while Helen watched the monitor and me.”

The rest of the evening did not go so smoothly. I wrote,

"The infusion had just about finished when I reacted, either to the cells or to a fever I was going to get anyway. I started shaking vigorously, and my heart rate went up. Helen gave me 25 mg. of Demerol, which didn’t stop the shakes. She paged a doctor who came in quickly. I got another dose of Demerol, more Benadryl, hydrocortisone and some Tylenol. Also they put me on oxygen."

Marge's birthday cakes

I was worried that the cells would not take, but as you can see, they did. I wouldn't be here without Denise, the Dana-Farber Cancer Institute, and The Gift of Life Bone Marrow Registry.

On Dec. 25th, 2008, in a post headlined Downhill all the way, I wrote, after I learned about my second relapse, that I thought it was the end of the road. I was thinking I wouldn't see my children finish growing up, wouldn't see my grandchildren.

I wrote about wandering over to 6A, where I would soon live, asking one of my old nurses, Myra, how I could go through chemotherapy and transplant again.

“Well, you have 48 hours to have your pity party, then you have to quit it and put on your fighting gloves,” she said.

It’s hard to believe it has been 10 years.

In this Philadelphia Inquirer story , I wrote about how Denise's life-saving donation, through The Gift of Life, was inspired by her desire to help the great jazz saxophonist Michael Brecker.

Another momentous event over the weekend was the celebration, on Sunday, of my Aunt Marge’s 100^th birthday. A group of us gathered in her apartment for a mid-afternoon party. It was a privilege to be there to mark the occasion and to see her looking so pleased, and so great. You can tell from the smiling faces in the photo that everyone was having a good time.

We had gone down to New York on Friday.

On the way, we had to stop at the dentist. I had catastrophized. I thought I had lost a chunk of my tooth and that meant yet another tooth was disintegrating, but I forgot that I had a filling in said front tooth.

So it was just a filling that had fallen out. He replaced it, and off we went.

View from theater seats

I wanted to go down to Little Italy to an old haunt, Puglia’s Restaurant, so we regrouped and off we went. The food was still good and the singing was still fun. We stopped in for a cannoli at the bakery down the block on Hester Street.

The next afternoon, we went to Lincoln Center to see “My FairLady,” starring Laura Benanti as Eliza and Danny Burstein as her father. It was loverly and magical.

On Sunday before Marge's party, there was brunch in Brooklyn and a walk (more loveliness) through Prospect Park.

Since getting back home on Monday, I've been a little under the weather, but not so much so that I didn't have room for my share of my re-birthday dessert with a couple of special people at Food 101 in South Hadley. 

Driven to distraction, driving towards NY

Grown-up kids at dinner with mysterious object

Been driving a lot because...

On Wednesday I reserved a ride for the trip to Dana-Farber. I got the confirmation call the night before, and then, the day of, a call from the driver, who asked if I wanted a ride at 2.  I said yes.

So I packed up and looked out my driveway, and when at 4:06 there was no driver, I called the number he had used to call me. But I got no answer and no voicemail. I called over and over until about 4:15 and then finally gave up and called the complaint line at MART, which arranges the rides.

I got put on hold and then told that the driver had left, listing me as a no-show.

WHAT?

I said.

"I've been waiting at my door."

The operator said she would file a complaint for me but in the meantime I was on my own.

It was a company (Prevalent Transportation, one of the contractors) that has taken me a zillion times before, and they know to come in the driveway or I can't see them. This happened once before when a driver waited at the foot of the driveway, didn't see me, and left without calling. If they don't see me, they can call! They usually do. The last time this happened, the operator told me they are not obligated to come into the driveway or to call. I imagine the guy just didn't feel like doing his job.

I called my people in pheresis at the Kraft Family Blood Donor Center at Dana-Farber and asked what was the latest I could get there. They said 4:30. A friend said he would drive me but by the time he got to my house I would never make it. So around 2:30 or a little after I jumped into my car and sped off.

I made it exactly at 4:30. They were impressed. I was wired and upset.

My nurse for the day, Marlene, tried twice to thread the needle into my left arm. Twice, it hit a valve and would not go in. I didn't have the help of my oxycodone because I couldn't take it and drive. It was unpleasant but I did some slow breathing.Tina, another nurse who was there, gave it a try on the other arm and went in successfully. They said it would go faster if I tried a double – not exactly the technical term – meaning one in each arm. This is possible with the new machines. I said I wouldn't mind but I would wait for a time when I had my pain meds in case I had a problem.

I started to take a little nap when the procedure was under way, but a doctor came over to talk, so that was that. Mandy is a nice pathology fellow. I showed her some of my medical writing, such as what it's like to live with two sets of DNA, and my most recent, on how treating neuropathy can be a pain. She said I should go on TV to tell my story of the four bone marrow transplants. I said I didn't know how to do that and wasn't sure if I wanted to anyway.

I finished around 7 and got back home around 9, pretty tired. It wasn't the best timing, because the next day I had planned to pop down to New York to see some friends and family and do some of the usual things such as run in the park.

I did it anyway. I parked in New Haven and took the train to Harlem and then went on to my cousin Jeanne's. As you do when in New York, I walked all over the place. Yesterday I did around 17,000 steps.

Some of us had a nice shabbat dinner on Friday. It was extended family, kids and a baby. Time flew. I was compelled to mention this while looking at my high school friend's children and a grandchild. I thought we were just in her room making lists of the boys we liked.

For dessert, I was surprised with a pre-birthday cake. Sweet! (One Donald Trump sentence structure allowed per blog post.)

Yesterday I ran a little more than four miles to and in the park and up to the reservoir. I considered going all the way around, but I looped back on the bridal path instead.  For someone who really isn't running, I figure that isn't too bad. 

There was so much activity that I thought a race was going on, but one of the runners said it was a training run for the New York Marathon.

After leaving the park, I got a bagel and a coffee and sat on the steps of a church on Lexington Avenue about 10 blocks south of 86th and Lex, where my mother's store used to be. Lexington Avenue feels in many ways the same, but the block where my mother's jewelry store used to be has totally changed. It's one big blob instead of small stores such as my mother's and Reggie the dressmaker's.

I was going to leave after my run but headed over to UN Plaza to visit my 98-year-old aunt again. When leaving New York I tend to dilly-dally even more than I do at home. I knew that I would be tired after picking up my car in New Haven but figured I'd caffeinate and get through it.

On the way to the 125th Street/Harlem train station in an Uber, I looked around and realized that I had left my laptop in Jeanne's apartment. We were already at 106th Street and would have to go back to 72nd. I asked the driver if he could turn around, but, of course, it is not so simple in an Uber. I had to send him a text message with the "new" address (the address from which he had just picked me up ) and an explanatory note and then re-enter the final destination. It's all in the app, so there was no such thing as using old-fashioned words to tell him, I later realized. Also, we had a bit of a language barrier. It was cumbersome and made me wish I was in a cab.

At $32, it was a pretty expensive trip. I don't know if a cab would have been better or worse. 

Having missed my originally chosen train, I got on the next one with a few minutes to spare and promptly fell asleep. Once at the train station in New Haven, I went to Notes on my phone to check my parking space number and saw that I must have not hit SAVE: The field was blank. Another fine kettle of fish...

I told the people on the elevator what had happened, and one man said I could get off at the sixth floor and just walk down. I remembered parking pretty quickly on the first floor, so I asked the elevator people what they thought about my starting at the bottom. "You could have lucked out," a nice woman said.

So I rode up with them and then rode back down, got out, and looked around for A-1 or something like that. I clicked the door unlock on my keys. A faint beeping grew quickly louder. 

Mirabile dictu!

I found the car, got in, and arrived back home around 9 with no more mishaps.

Today I was tired but still glad I went.

Good show, good run, good visit to my hometown

Scene from "Falsettos" on Broadway, with Andrew Rannells in hospital bed

Tradition, tradition...

Facebook was kind enough to send me a memory from the New York visit that Katie and I had two years ago when we saw the wonderful and bubbly "On the Town." It started almost the same way as our trip earlier this week:

"Drove in on Saturday and got a spot good for the two days we needed. Happy feeling." Just replace Saturday with Monday and you get the same thing.

This year's winter pick, "Falsettos," was a different kind of show. A comedy and a drama at once, it is a revival of a 1992 play by William Finn and James Lapine, the creators of Spelling Bee, which originated in Great Barrington.

The play about two gay Jewish men and their extended family starts out at a fast, funny clip, then takes a turn in the second act as one gets the mysterious illness afflicting gay men at the time of the second act, 1981. Writing in the New York Times, Charles Isherwood called it "exhilarating and devastating." You could hear a lot of laughter at the beginning and a lot of sniffling at the end.

I would recommend seeing it but the limited run ends in a week. Check out this feature in Playbill.com to hear a medley. It was interesting to see Andrew Rannells, who we saw as the Elder Price in The Book of Mormon, in the more nuanced role of Whizzer to Christian Borle's Marvin.

Nice place for a run

It was our second year staying at an Airbnb in the Lower East Side. With its scattering of overgrown community gardens, it is a different world. Katie drove in all the way, and, as an honorary New Yorker, successfully turned on her parking radar and found a spot in walking distance of our place on 9th street off Avenue C.

Due to street cleaning from 11 a.m. to 12:30 on Tuesday, someone would have to sit in the car and move out for the street cleaner, a New York routine in which I delight. Then the spot would be "good for tomorrow," meaning that we wouldn't have to sit in it or move it on Wednesday before our checkout.

Monday night after unpacking, we wandered around in some of my old stomping grounds in the West Village, ate dinner at a tapas restaurant and found dessert at a nearby patisserie. Being an old(er) person, the next day I woke up early and went for a run. Our place was conveniently located across the street from 9th Street Espresso, so I got up and got a coffee before heading the couple of blocks over to East River Park.

After doing the hilly Hot Chocolate 5K last month, I had an easy time jogging under the Williamsburg Bridge about three miles on the flat pathway with the beautiful views of the river. I feel so much better about everything when I can run without pain.

I made it to the car on time and got so engrossed in talking to a friend on the phone that I didn't notice that the street cleaner had pulled up behind me. The driver started honking. The idea is to pull out, wait for the street cleaner to pass, and then back in. But a car had pulled even with me and I couldn't get back in. Parking panic ensued. I zoomed around the block and got back in the space. But you still have to wait the whole time, so Katie came and took my place while I took a shower.

We had what my father called "free time" before meeting for dinner and going to the show. We were a little disappointed afterwards that Rannells didn't come to the stage door with some of the other performers, but we got over it with cheesecake afterwards.

Last-minute New York trip, the why and the how

Audrey and Herbert, 1947

I have popped down to New York for the funeral of a good friend's father. It was a last-minute decision but I had the time (and no medical appointments) so I said, why not.

The friend is Tommy Rosenfield (now, as a grownup, Tom, but always Tommy). We've been friends  since our idyllic days in Atlantic Beach, with our friendship continuing through Friends Seminary and beyond.

His father, Herb Rosenfield (Aug. 6, 1918 - July 20 2016), lived a good long life, but of course difficult is not a sufficient word to describe what it is like to lose a beloved parent. Tom started his remembrance of his father the way I might have started mine had I been able to speak through the tears when he died: He remembered his father talking about the ice being delivered for the family's ice box. From much later, I can picture Herb going into the ocean at Atlantic Beach, while his wife, tanned, turbined Audrey (my mother always said she was a real beauty), sat in her usual spot further away from the ocean, being the first person to greet us with a warm smile when we came down the small boardwalk before hopping onto the sand. And then Mary Ann, putting down her book, telling me to stop being a chicken and to go into the water with her.

Temple Emanu-el

This morning, after paying my respects to Herb's children, Tom, Patty and Nelson, and to the rest of the family, I had time to wonder at the main chapel in Temple Emanu-El and was lucky to be standing next to a knowledgable man who told me about the mix of architectural styles and the importance of the temple as a must-see destination in New York. I read later that the temple, completed in 1929, is the world's largest synagogue, accommodating 2,500 worshippers.

It was good to give Patty, Nelson and Tom a hug. The timing was so strange because the night before I learned that Herb had died, a dreamt that I was hugging Patty and Tom.

I am staying two nights but wasn't sure about that at first because I thought I would have to ask my cousin Jeanne for two nights on her couch. Then a friend from Friends, Craig Evans, offered his apartment on east 57th Street. I took him up on his offer and got here last night; after recovering from my trip, I had a very nice dinner with his wife, since Craig only coming into the city this morning.

Tonight I will see them again at a reception at the Century Club.

Always wondering which way is best to come into the city, I took the advice of some friends who said they like to drive to New Haven and take Metro North from there. Someone said I live dangerously to have left my car in an open air parking lot, but I figure there are better targets than an old Subaru. One hopes, anyway.

Disheveled Me

Getting swept out of Grand Central in a crowd in the early evening, I didn't think it would be easy to get a cab or an Uber. So I lugged my suitcase down the subway stairs, going very slowly, because I didn't want to repeat my mishap of somehow flying off the top step in the Paris Metro and doing a belly-flop into the car.

Once in the subway car, I caught myself when it jolted and I started to jerk backwards. Then I lugged suitcase and laptop up the stairs and went  across town and up a few blocks. Did I say that I was dripping with sweat?

When I had dropped Maddie off with Jim Bloom before I left, he asked why I didn't just take Amtrak from Holyoke. I don't really have an answer to that question. As I wobbled in the subway, looking like the world's most disheveled out-of-towner, with baseball cap askew, I asked myself why I was doing this.

"Because I can," I said to myself.

Coming in for a landing

Blowing in the wind, Wellfleet

Dissonance: One day running around New York and seeing two shows, another on the beach with my hair blowing in the wind, and then back in the chair with a needle in my arm.

This all happened in a short period of time. The Cape Cod mini vacation ended Wednesday morning, when Katie and I drove to Logan Airport for her flight back to Minneapolis and I went straight to Dana-Farber for the light therapy treating my graft vs. host disease of the skin. But it was wonderful and restorative so I can't complain. Well, maybe a little because it was so short and when the planning and the thing itself is over, the inevitable letdown occurs. Think, First World Problem-itis.

I got to Dana-Farber early enough to go up to my old hang-out, 6A, one of the bone marrow transplant units at Brigham and Women's Hospital. Two of my favorite nurses were there. We gave each other big hugs. One got tears in her eyes when I showed her the photos of me and Nell. The aide who bathed me when I could barely move came over and talked to me about how sick I was. My tough-love nurse, Myra, wasn't there, and I said to send her my regards. We talked about how she had made me sit in my chair when all I wanted to do was get back to bed, and she had said, "You'll sit up and eat your lunch like a normal person." We talked about how when I relapsed the second time, I went straight to the sixth floor and asked Myra how I could go through it again, and she said, "You can have your pity party for an hour and then you'll put your boxing gloves on."

Race Point sunset

I also dropped in on a patient who had just had her bone marrow transplant. I am happy to be getting more patients to talk to through the One-to-One program in which patients who've been there talk to those going through it.

I'm more useful for people who are having a hard time or who have relapsed, and I guess that's not what patients were looking for. But recently I got three.

 If they ask directly for my story, I tell it to them, but if they don't, I gloss it over by saying a lot of stuff happened to me including relapse but Dana-Farber figured it out. I don't like to get into too many specifics because I understand the tendency for someone to think it might happen to them. On the positive side, of course, I'm alive and well so that is what I focus on.

I gave two tips to the patient the other day: During your year of dietary prohibitions, you can still eat fruit by cooking it up with lemon and cinnamon; technically called fruit compote but named fruit mush by my mother and me. I also told her that if she wanted eyebrows, she could order stencils on line.

I was pretty tired by the time I got to the Kraft Family Blood Donor Center, and I fell asleep almost as soon as the needle went in. A problem with going on vacation with my kids is that I always want to do one more thing on the day that we're leaving, while they consider it packing up day only.
So I got up super early Wednesday and did my one more thing, going to the Flying Fish for coffee and a muffin and then walking over Uncle Tim's Bridge and looking at the water.

When I woke up from my nap, on Wednesday, my nurse told me I was almost done. It was only 5 p.m. and not the usual 6:30, so I asked if she had done five cycles instead of the usual six. No, she said, it was the faster new machine. Some people are doing it even faster by getting a needle in each arm, but I couldn't tolerate it because my veins have been used so much that I need to alternate and rest one arm.

I didn't have to deal with any crazy drivers because the crazy driver was me. I didn't want to do any more driving in the same day so I stayed over at Margaret and Nick's for a nice dinner and got a fresh start the next day.